Tag Archives: Amyotrophic Lateral Sclerosis

My sister Leslie is my favorite of my older sisters. Sorry to the rest of you, but 1)she’s probably the only one who would’ve read this web blog anyway so you won’t even know I’ve said it, and 2)c’mon. She’s your favorite too.

My earliest memory of Leslie was when I turned 7. I had just been part of a merger–meaning my dad had married her mom. I had 6 older siblings already, and then became “#11 of 12” in another family. It was cool, because Rachel, my actual favorite sister (but not older, so there’s no contradiction there), was my best friend so it was kinda an extended sleepover, at first. Anyway, that’s another story. My 7th birthday, I got a package! From California! It was a red Minnie Mouse watch from my sister Leslie.

Leslie lived far away, in California–so when she came for Thanksgiving or other visits, it was a HUGE deal for me. Leslie taught me to play poker (don’t pick up the cards until they’re all dealt. They’ll cut your hand off!). She laughed at my jokes when everyone else just rolled their eyes or told me I was inappropriate. She called sometimes when I was a teenager, just to talk to me (don’t let any boy treat you like anything less than a princess, no matter how cute he is). When all the sisters got together to go shopping and elected me to watch all their kids instead of going, Leslie was the one who thought to buy me a shirt. It was black and white striped and I wore it until my midriff hung out the bottom and it was mercifully disappeared. I never felt like the goober of the family around her. Leslie got me.

Leslie was an artist, a sculptor, an interior designer. She was so creative and talented. She was so beautiful. She was full of life, spunk, sarcastic wit, fire. This is a picture of her, popping up out of the sunroof of the limo–this was classic Leslie:
So what does all this have to do with the Ice Bucket Challenge? Well, my favorite older sister was diagnosed with Amyotrophic Lateral sclerosis. ALS, or Lou Gehrig’s disease. It started with her having problems with her hands. My sister, the artist, couldn’t use her hands anymore. It progressed so quickly. We kept hearing things–look at Stephen Hawking, he’s been around for decades; it might stop progressing at some point; it could be quick; it just depends…..

I started calling Leslie to talk to her, to hear her voice, because she was losing her ability to talk, too. Oooh, how it broke my heart to hear the slur, and the frustration because her mouth, her vocal chords, couldn’t keep up with her perfectly untouched, amazing brain. I wished I could record everything, because I knew it was going to end soon.

I had the opportunity to travel to California when I could take time off from work, and help out when her sweet husband couldn’t be there. Those times were bittersweet. I remember hanging out on the couch, watching HGTV with my sister, just having conversations. I still hear her voice from time to time, berating me gently for not following my dreams: “Don’t wait! If there’s something you love, that you want to do, don’t wait! You never know what is going to happen, you have to just do it now. Don’t wait.” I never wanted to leave, but I also could just feel the hopelessness of knowing that no matter how long it took for Leslie’s body to kill her, she would be trapped in there, perfectly sound of mind, with no ability to speak, move, swallow–yet strangely she was still able to feel pain. I would cry myself to sleep every night while I was there, and pray for the strength to be positive and to be as cool for my sister as she was for me when I had needed her. I hope I was. I really tried, even though there was often nothing I could do but…..well sometimes there was just nothing I could do.

When I talked about Leslie, I would say she died from ALS, and people just shook their heads. I could say, “you know, Lou Gehrig’s disease” and then they might get it. Usually not. When Leslie was sick, there was like, one or two experimental drugs she could try, that might help, might slow things down. They didn’t. There isn’t a lot of demand for research for cures or treatments when people don’t even know what ALS is. Usually fundraising for ALS gets lumped in with Multiple Sclerosis fundraisers.

Along comes the Ice Bucket Challenge. The rules are simple. You have 24 hours to dump a bucket of ice water over your head and donate 10 bucks to ALS research, or you donate $100 to ALS research instead. You take a video of your ridiculous reaction to being freezing cold and wet, and challenge others. It started with one man, and then his friends, then it spread through the pro athlete community, then celebrities and then EVERYWHERE. It’s gotten to the point where people are bothered. There’s a backlash. People are angry because it wastes water. Or because they have info that the ALS Association doesn’t spend the money it gets on research, just salaries for officials. Or that ALS cure research means stem-cell research, which of course means that if you support it, you want babies aborted. All, as my Brit friends would say (or Doctor Who), bollocks. Here’s my thought. This challenge is spreading because people can do something good, and have fun, and challenge other people and watch their videos. Enough evil and sadness and negativity is spreading, and people are super-psyched to pass on all of THOSE Facebook posts. Why can’t we do this and just spread the goodwill, ya know?

There is so much more….. every time I see someone I know, or don’t know, or celebri-know, dump a bucket of water over their head, and then freak out, and then laugh, I picture my sister laughing along with me. I know that as a family member of someone who died from ALS, I feel the comfort of knowing that other people are learning just what our family, and my sister went through. Then there’s the money–the kind of money being thrown at this disease could very well fund at least some treatment, if not a cure.

Project ALS is an organization that funds and facilitates research for a cure for ALS. They have a 4-star, 91.4 percent rating on CharityNavigator.org. Here’s a link for them: www.projectals.org . There’s the ALS Therapy Development Institute, also 4 stars and 97.31 approval rating through Charity Navigator. Their link is www.als.net. (For the record, the ALS Association also has a 4-star, 90.73 percent rating through that website).

I’d love for you to go watch this video on YouTube. It’s Anthony Carbajal, doing a rather burlesque Ice Bucket Challenge. If you don’t want to see a man in a bikini top and tight shorts, washing his car (sometimes with his butt), then fast-forward to about 1:44 into it. What I REALLY want you to see is his explanation of what the Ice Bucket Challenge means to him.

Then, go to http://www.bostern.com/blog/2014/08/15/what-an-als-family-really-thinks-about-the-ice-bucket-challenge/ and read.

If you need some fun, you can watch the Williams family Ice Bucket Challenge. There are cute kids and stuff, too. Then maybe YOU can jump on this bandwagon. It’s a worthy cause, I promise you.

But for me, it’s personal. This one’s for you, Leslie (I still get choked up when I see Design on a Dime).